Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Jun 18, 2019

My post tonight is nothing but venting and a bit of poor me. I’m caring for my husband with Parkinson’s and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I’m not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It’s impossible to even carry on friendships anymore, I’m unavailable when I’m invited which is becoming less frequent all the time
I don’t leave him anymore unless it’s to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.

@IndianaScott

Hi @mkjames You raise a crucial aspect of caregiving in your post: feelings of guilt! I wish there was a way to banish guilt from the lives of all caregivers. I know I always wanted to do everything and anything that would ease my wife's journey and when I couldn't for some reason, would be wracked with guilt. Caregiving comes with no training, often with little or no advance warning, and no employee manual! Suddenly we simply get dumped into the deep end of the pool (or middle of the ocean) and are told to swim as best we can.

Caregiving, as you noted, also often contains times of tremendous anxiety over what is to come, what is around the next corner, all when we are dealing with a full plate of 'today'! Living, as they say, 'in the moment' is very hard with caregiving since there is not only 'the moment', but the past moments of things undune, and the future moments of far too many things to get done! Then to top that off the slightest change in our patient can alter our entire caregiving landscape and every moment suddenly becomes different.

I will also endorse your suggestion of hospice. It was an extremely emotional and almost devastating moment when the doctor gave us the prescription of hospice care, but the care my wife received though hospice (she chose home hospice care) was second to none and one of the very few times her medical care was truly patient-oriented rather than healthcare-system oriented.

You capture the caregiving 'adventure' well!

Continued strength, courage, and peace

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Scott, very well-said. Caregivers vary in what they can handle. I felt truly blessed I could keep my husband and home, hospice for the most part was satisfactory. I would like to share more, just can't right now. While reading the posts my heart aches for each of you. and what you have been through and are going through.

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Reading your post I said that’s me in caring for my mom. I know how you feel…right now I’m deep breathing to get rid of sob and that tight feeling in my chest…and the pounding headache. This is the closest I can get to having a cup of tea with you….but I’m with you and holding your hand.
I get it…we are doing our best and that’s all we can do. Peace to you and the scent of spring lilacs.

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When I first joined this care givers group several years ago now, my sister was in the middle stage of generic dementia. I was so frustrated with her and myself and we kept backing into a corner of no win situations because she was confused and i wasn’t observant enough to know what was confusing her. The advice I got from someone in this group is that when you are in a tense/non communicative/ almost combative situation, use the 6 magic words. “I was just trying to help”. I used them within the first hour that I learned of them without any further commentary or explanation. and THEY WORKED. She diffused the firecracker temper, calmed down turned and walked gently away. That was all it took. I use them rarely but they have diffused an explosive situation many times. Maybe it would work for some of you.

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@dem2301

First of all, thank you for the support and encouragement. Yesterday was a really hard day and I was absolutely exhausted. I've read the comments about hospice. When I feel along with his doctor input hospice will certainly be a major consideration. I just don't think we're there yet. The reason I'm unable to vent to my children is because they really want me looking for a care facility and again I'm not ready for that. I worked as a nurse for 37 years and feel I'm providing him with better care here at home. Some occasional in home help will be my next step. He's resistant to that idea but for my health I need to. I feel stress and anxiety are a big factor in cancer diagnosis and progression. I'm fearful of breast cancer recurrence if I don't get my emotional health back in check. Our oldest daughter died of lymphoma 6 years ago and she lived an environment of unrelenting stress and feel the reccurance she suffered 5 years after her original diagnosis played a part. Today is a better day, he noticed some flowers I arranged and said they where so pretty. The little things mean a lot.

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@dem2301 I’m sorry for the extremely difficult times you are having. You are a nurse, but even nurses work shifts, not 24 hours! Yes, he probably is getting excellent care, but the cost to you may just be too much. Talk with your local hospice and/or nursing homes. They may offer respite care or short term care. Respite care is usually a weekend or while caregiver is out of town. See what they can offer. And, in home help would be a wonderful next step. The helper could manage your husband 1-3 times a week while you get a much needed nap.
Have you ever talked with your husband about an assisted living/nursing home? Would he be able to have the conversation? Maybe he would feel better knowing that your not wearing yourself out. Maybe he, too, needs friends and activities. You don’t need to do it all! The reply from @vickys was very helpful. Keep in touch because we worry about you

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@shirleymac

I can truly sympathize, even though my situation is different from yours (dementia and a stroke). I find myself sighing a lot, even when I don't need to. I am so frustrated with the total lack of support or understanding from my husband's family. I feel very trapped some days and find it difficult to keep up with friends, much less see them. I would love to take a break away from my husband, just to regroup, but this seems very unlikely/impossible. So far, my health is holding up, but I am on more meds than before and some days that is not enough. I guess I am venting, too, as well as sympathizing. Try to find some time for yourself. I go to book club about once every 6 weeks. That's not much, but it helps. I take our dog for a walk at least once a day. I'm out, but nearby. I hope you can find help with your caregiving. We all feel overwhelmed, sometimes, and other caregivers understand. Feel free to vent any time!

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@shirleymac vent all you want as often as you want! It can be the best medicine! I know that caregiving is exhausting, frustrating, and stressful. That’s why we’re here—we can listen and maybe give suggestions. And, thank you for your suggestions

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I’m a caregiver, and I lurk more than post. A vented frustration is good input for me. I may not add to what is being said, but your posting helps me, and hopefully others. Thank you

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@klaken

I’m a caregiver, and I lurk more than post. A vented frustration is good input for me. I may not add to what is being said, but your posting helps me, and hopefully others. Thank you

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Hello @klaken Glad you are here with fellow caregivers here on Mayo Connect. I know how intensely isolating and overwhelming caregiving can be for every one of us! My favorite venting activity was an old feather pillow on our sofa, which many nights became my punching bag. I cried into that pillow more often than I cried in my pillow in high school and I did that A LOT back then!

Often times I find myself saying things outload these days because just letting it out — even if only the walls and the dog hear — helps me.

I hope it is sunny and lovely wherever you are today!

Cheers to you and all caregivers!

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@klaken

I’m a caregiver, and I lurk more than post. A vented frustration is good input for me. I may not add to what is being said, but your posting helps me, and hopefully others. Thank you

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I lurk!
Vented frustrations and stories let me know I am not alone. And help me understand.
I’m thankful to know there is a community out there….

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@vickys

I lurk!
Vented frustrations and stories let me know I am not alone. And help me understand.
I’m thankful to know there is a community out there….

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…and we are thankful YOU are here @vickys Strength in numbers and all that!

Cheers to YOU!

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After a week of increasing confusion, weakness and a productive cough I managed to get my husband to the Doctor, it certainly wasn't because he wanted to go.The chest x-ray was clear but he has a UTI. Hopefully the antibiotics will work fast and he returns to his baseline, his history however tells me he will stabilize but there will be a decline.Hope everyone has a good weekend, it appears I have my work cut out for me.
.

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@dem2301

After a week of increasing confusion, weakness and a productive cough I managed to get my husband to the Doctor, it certainly wasn't because he wanted to go.The chest x-ray was clear but he has a UTI. Hopefully the antibiotics will work fast and he returns to his baseline, his history however tells me he will stabilize but there will be a decline.Hope everyone has a good weekend, it appears I have my work cut out for me.
.

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@dem2301 A UTI can cause some strange manifestations, and the symptoms you described seem to be common among them. Take deep breaths. I imagine the antibiotics may take a day or so to start working, but some of the more troublesome signs may go away quickly. It's frustrating, isn't it? We're here for you.
Ginger

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@dem2301

After a week of increasing confusion, weakness and a productive cough I managed to get my husband to the Doctor, it certainly wasn't because he wanted to go.The chest x-ray was clear but he has a UTI. Hopefully the antibiotics will work fast and he returns to his baseline, his history however tells me he will stabilize but there will be a decline.Hope everyone has a good weekend, it appears I have my work cut out for me.
.

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Hi @dem2301 I am sorry to read you had a tougher week than usual. Those days of having some additional healthcare issue piled on top of everything else are especially challenging to caregivers for sure!

I realize every patient is different, but I know in my MILs situation with her dementia every medical intervention she had, no matter the cause, resulted in a decline in her abilities. It is interesting to me to read you are seeing the same phenomenon in your husband.

I agree with @gingerw that it is amazing what antibiotics can do so quickly for some infections. My wife was prone to UTIs during her illness and she used to joke all I had to do was show her the antibiotic pill and it would start to get better 🙂

I hope your weekend unfolds into a good one and the sun is shining wherever you are today.

Strength, courage, and peace!

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